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United Kingdom: News from #MEAction Network UK

Discussion in 'News from organisations' started by MSEsperanza, Nov 22, 2021.

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  1. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Last edited by a moderator: Nov 22, 2021
    MSEsperanza, Nov 22, 2021
    #1
    Joh, DokaGirl, Starlight and 4 others like this.
  2. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    MSEsperanza, Nov 22, 2021
    #2
    Joh, cfsandmore, DokaGirl and 8 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Dec 2, 2021
    #3
    Louie41, Trish, adambeyoncelowe and 2 others like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "interestingly nice often publishes something in the bmj but in this case
    nothing has been published yet    "

    does anyone know if NICE have anything in the pipeline on this?
     
    Sly Saint, Dec 2, 2021
    #4
    cfsandmore, Ash, Wyva and 1 other person like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "by saying post-exertional malaise is a key symptom for me cfs i think is critical"

    yes, but it still isn't mentioned on the NHS websites.

    Also, PEM is now being picked up by others not just the ME community and they are putting their own spin on it. It is crucial that it is put out there asap as the defining symptom of ME, but that this is expanded on with the full NICE guideline description of what it is.
    "
    Post-exertional malaise
    The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation.


    Activity
    Any effort that uses energy, which includes cognitive, emotional and social activity as well as physical activity. Different activities combine and interact to cause a cumulative impact for the person."
     
    Sly Saint, Dec 2, 2021
    #5
    RedFox, oldtimer, cfsandmore and 4 others like this.
  6. Trish

    Trish Moderator Staff Member

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    Trish, Aug 11, 2022
    #6
    bobbler, RedFox, MEMarge and 4 others like this.
  7. Trish

    Trish Moderator Staff Member

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    #MILLIONSMISSING LONDON SEPTEMBER 2022

    SEPTEMBER 13 @ 1:00 PM – 3:00 PM BST
    #MEAction UK is excited to be able to meet again in-person this September for #MillionsMissing London 2022! Join us at Parliament Square, London SW1A 2AA on 13th September from 1-3pm to demand the millions of pounds missing from ME research in the UK! Mark your calendars now!
    ...
    Speakers:
    Prof Douglas Kell – microclot research in ME.
    Hayley Valentine-Howard – pregnancy and ME
    CureME – Eliana Lacerda
    ...

    More details at link:
    https://www.meaction.net/event/millionsmissing-london-september-2022/
     
    Trish, Sep 1, 2022
    #7
    josepdelafuente, MEMarge, bobbler and 3 others like this.
  8. Trish

    Trish Moderator Staff Member

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    From ME Action:

    #MillionsMissing London is Postponed
    Due to the death of her majesty Queen Elizabeth II and the period of national mourning that we are entering we have postponed #MillionsMissing London that was due to take place on September 13th in Parliament Square.

    https://www.meaction.net/2022/09/09...ostponed/?mc_cid=fa704a8adc&mc_eid=83ddbd3a71
     
    Trish, Sep 9, 2022
    #8
    Ariel, RedFox, NelliePledge and 1 other person like this.
  9. Trish

    Trish Moderator Staff Member

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    https://www.meaction.net/2022/09/09/elementor-58714/?mc_cid=865fd5cab4&mc_eid=83ddbd3a71

    The #MillionsMissing Scotland demonstration, due to take place on Wednesday 14th, has had to be postponed.

    Following the death of Her Majesty the Queen, the Scottish Parliament is suspended, which means we won’t be able to achieve the aims of the event. We appreciate that it’s disappointing and apologise for any inconvenience caused, particularly to those of you who have been planning your journeys and managing your energy to make it.

    We’re looking at new dates in the last week of September and we’ll update you as soon as we can. Thank you for your understanding.
     
    Trish, Sep 10, 2022
    #9
    Ariel, NelliePledge and RedFox like this.
  10. Trish

    Trish Moderator Staff Member

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    Millions Missing London is on next week.
    From an email:

    #MillionsMissing London is getting nearer and we are excited to be able to meet up again in person. Just one week to go now, Tuesday, 18th Oct, Parliament Square 1-3pm and we would love you to be involved either in person or virtually!

    We have some fantastic speakers planned. Prof Douglas Kell from Liverpool University will talk about his micro clot research. Hayley Valentine-Howard will talk about how ME affects pregnancy and its implications on delivery and the postnatal period and Claire Tripp will discuss the Decode ME Study. Sarah Boothby, Maeve Boothby O’Neill’s mum, a registered social worker advocating (pro bono) for families where death from ME is a possibility will be talking about her experiences.

    We are delighted to get so much support from MPs. Emma Lewell-Buck MP, Hywel Williams MP and Alex Chalk MP, Lord Bethell, Baroness Scott and Fleur Anderson MP have all accepted our invitation. Lord Bethell has kindly agreed to speak.
    https://www.meaction.net/event/mill...new-date/?mc_cid=ce8dc3d882&mc_eid=83ddbd3a71


    Also suggestions for virtual actions:
    https://www.meaction.net/?s=Millions+Missing+London
     
    Last edited: Oct 11, 2022
    Trish, Oct 11, 2022
    #10
    NelliePledge, RedFox, rvallee and 1 other person like this.
  11. Andy

    Andy Committee Member

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    Andy, Oct 17, 2022
    #11
    NelliePledge and Trish like this.
  12. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    InitialConditions, Oct 19, 2022
    #12
    Binkie4 likes this.
  13. Andy

    Andy Committee Member

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    Andy, Oct 19, 2022
    #13
    Binkie4, It's M.E. Linda and InitialConditions like this.
  14. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Join the UK and Scotland’s digital campaign this #MillionsMissing

    https://www.meaction.net/2023/04/14/join-the-uk-and-scotlands-digital-campaign-this-millionsmissing/
    Two photo categories:

    1) Your view with ME

    (photo from bed/couch/chair showing reality of being confined to home)

    2) The spaces people with ME are missing from

    (photo showing all the places and activities that people with ME can't experience in person)
     
    ahimsa, Apr 29, 2023
    #14
    janice, It's M.E. Linda, Trish and 1 other person like this.
  15. Andy

    Andy Committee Member

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    #MEAction UK And Scotland Update Prevalence Figures Based On New Data

    "Both the UK and Scotland branches of #MEAction will start using updated figures for the prevalence of ME, based on a recent US survey."

    "The Center for Disease Control (CDC) has published results of a survey which provides data following the onset of the COVID-19 pandemic and is the most recent credible data we are aware of. Importantly, it will include any increase in the prevalence of ME due to the pandemic, as well as many with Long Covid, due to the overlaps between the two conditions."

    "The US survey results show that 1.3% of adults in the US have ME/CFS. This is significantly higher than the 0.4% estimate derived from UK Biobank data before the COVID-19 pandemic and used in the NICE guideline on ME/CFS.

    Applying these new estimates to UK populations gives estimates of 700,000 people with ME in the UK and 58,000 in Scotland. Prior to this we were using figures of 250,000 and 22,000 respectively."

    https://www.meaction.net/2024/02/01...-update-prevalence-figures-based-on-new-data/


    Our discussion thread for the CDC survey is here, CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al
     
    Andy, Feb 3, 2024
    #15
    ahimsa, MEMarge, shak8 and 2 others like this.

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